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| Can one have blepharospasm with spasms? |  | ||
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Posted by: cfmckr ® 05/16/2012, 14:28:10 |
Now what do I do? I went to the doctor for my second round of botox injections yesterday. I had received 50u the first time and I was looking forward so much to this second treatment hoping that we would be increasing the dosage and getting closer to making my able to go back to work and being less miserable. It was a very long 9 weeks of waiting. I sat in the office very tense with my eyes closed. Of course when he came into the office to speak with me my eyes popped open and we talked. In a nutshell he felt that since he had given me 50u on the first visit and that was a more than moderate amount I should have had more of a response to these 50u. All I experienced from this first round was the fact that I could no longer knit my brows together. I still had severe photophobia. On “bad” days I just walked around with my eyes closed – squinting from under my eye lids so I wouldn’t walk into walls. I screwed up my face just as if someone was directing a blazing white light into my eyes. What was key in the conversation was that I could open my eyes at any time (they did not clamp shut). I didn’t have “spasms” where I was unable to open my eyes. I could open them but within a second or two I had to close them against the discomfort. I also told him that within 30 minutes of taking Ambien this sensation went away. He was very interested in this. He had never experienced a patient having this reaction to Ambien. We explored the possibility of my blepharospasm being not primary but secondary to another issue. Encephalitis , meningitis, head injury? No never. Dry eyes were talked about. In 2008 when I used contact lenses for a few months that is when I started (if I remember correctly) having photophobia symptoms with TV and driving. I went to see a neuro-optomologist who diagnosed me with blepharospasm and severe dry eye. I responded very well to lubricating eye drops. Then after that stopped working I went to see an optometrist who examined my eyes and agreed with dry eye syndrome although no damage to my corneas. She put in punctual plugs and that worked like a dream…for a while. Then Restasis for a few months with no discernible improvement and then upper punctual plugs and those worked for 48 hours. Then nothing seemed to work. The plugs were replaced three times in the left eye and now this third one has fallen out. The doctor was reluctant to try another round of Botox because, despite the high dose, it didn’t seem to improve my blinking and squinting. He thought if I have blepharospasm it was an atypical case since my eyes didn’t spasm shut. I closed them for comfort against the glare. When I try (always successfully) to open them it is very uncomfortable and I feel compelled to close them. But this is all for comfort not because I cannot control them. He wanted to try klonopin and refer me to a cornea specialist (MD) and not do a second round of botox at a higher dose. He said the treatment and dose of my first visit should have given me some relief so we would know that we are going down the correct road. Since it did essentially nothing (except give me a nice smooth wrinkle free between the brows appearance) perhaps we were going down the wrong road and needed to examine the causes for my blinking and squinting in another area. In other words secondary blepharospasm. I was very disappointed. I asked if it would hurt to try an increased dose of botox and he said no it wouldn’t hurt to try and gave me 75u of botox injections all around the eyes. Probably six injections around each eye. I am to take the klonopin .5mg twice a day and call him in a month to see if this improves my situation. He recommended an MD specialist in “dry eye” who does “all sorts of experiemental” treatments. So perhaps he can treat the dry eye from an MD’s perspective and not that of an optometrist. We all know that it is experience and volume that makes these doctors as good as they are. BTW I don’t feel that the doctor I saw for the botox treatments is without a great deal of experience with blepharospasm and its treatments. He was known to BEBF. So I am disappointed and feel that I am starting all over again with finding out what exactly is my problem. Any input or opinions are greatly appreciated. Can one have blepharospasm without the “spams” that clamps ones eyes shut? Of course today seems fabulous so far. The klonopin has me floaty and mellow. Not altogether an unpleasant feeling. Mellow is good. But my days always start out great in the AM and progress to my blinking and squinting as the day goes on. Never do my eyes “clamp” shut so that I CANNOT open them. It is just uncomfortable and impossible to keep them open against the glare. Even when there is no glare or even sometimes with no lights on. Sunglasses help but mostly to hide my closed eyes. So any thoughts on all this? Opinions and input is greatly appreciated.
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Posted by: tatia ® 05/16/2012, 20:07:43 |
Hi Carol, To clarify, you say you can still open your eyes but it's just uncomfortable to do so - when this happens can you open them up all the way? Or can you just manage to get little slits open? Regarding Botox dosage, it's not uncommon to get 100MU for blepharospasm, so you still have room to experiment. In case you haven't heard and were interested: the Tucson support group is meeting on June 9. Tatia |
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Posted by: cfmckr ® 05/16/2012, 22:18:02 |
On my bad days I can only open my eyes to slits to peak through them to see and then have to close them because it is uncomfortable. I can make my eyes open all the way and have that surprised look but again only for a second to see. I am forcing them open but it is very uncomfortable. It feels like the light that is killing me. While 100u of botox is not uncommon the doctor is still reluctant to increase it to that amount without any indication that it is working. I had to talk him into the 75u. I would love to come to the meeting in Tucson but it is a good 4hrs away from me. I am also scheduled to work the night of the 9th and the night of the 10th. That is if I can work at all. If I can't then I have bigger problems than driving 4hrs to get to Tucson:) Again I would love to attend but don't think it will be possible.
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Posted by: In Indiana ® 05/17/2012, 07:06:41 |
Hi, Carol-
Prior to treatment, my eye muscles pulled to the point that it was very painful and the eyelids scraped against the eyeballs. My eyes wouldn't want to open, because it was so painful. It was much easier to keep them shut. I have blepharospasm secondary to a sodium ion channelopathy. It took years to figure this out, but knowing what I have has been very helpful. It is what it is, and I can deal with it. Keep looking for the answers and for what works best for you. I am going to give you a suggestion regarding Klonapin. The neurologist who prescribed Klonapin told me to take the very smallest amount that I could, only when I needed it, to have a therapeutic effect without the side effects. When you mention how you feel on Klonapin, that's a side effect. You want to work with your prescriber to find an amount low enough that helps with the symptoms but doesn't cause the side effects. Best wishes to you! |
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Posted by: tatia ® 05/19/2012, 22:52:36 |
Well that still sounds like blepharospasm, whether it's primary, secondary, or reflex. I hope your doctor will continue to work with you. If not, don't hesitate to get a second opinion. I understand about the meeting. I haven't even made it to one yet myself, I just wanted to make sure you knew about it. Tatia
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Posted by: blinkalot ® 05/17/2012, 07:34:56 |
Hi Carol
your symtoms are a lot like mine my eyes do not slam shut but i do have the urge to close them just for the relief I have had three bouts of botox and i am not sure the amount ,It has been over three months since my injections and my eyes are still wide open with only problems arrising when i am in a vehicle I have just returned from my Dr. and he and i have decided to see how long the botox lasts, he said he will have me in imediately if the botox starts to wear off He is a Dr. in Kingston Canada and seem to be charting me pretty good. I have a journal which i record every day and when i visit the Dr. he reads in front of me and we discuss the situation. Unfortunately I have developed facial dystonia which we will start to work on. I take antidepressants and anti anxiety for my situation and they seem to help. Well Carol I hope you get some good help as this thing is a nuisance to MY life Sincerely Bill |
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Posted by: Norah-Jean Perkin ® 05/19/2012, 22:25:31 |
Bill and Carol, your blepharospasm spasms sound similar to mine. It can be hard to open my eyes,but never impossible, and it's just more comfortable, especially in a car or listening to a lecture, play, etc., to keep my eyes shut. Also have facial dystonia, and the Botox helps with that, though it hasn't been as successful with my eyes. Norah-Jean in Stratford, Canada |
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Posted by: pgh2869 ® 05/17/2012, 18:07:07 |
Hi Carol,
I really feel for you and can totally empathise with what is happening as my blepharospasm is very similar; i.e. the eyes not clamping totally shut, but reducing to little slits which mean I have to tilt my head backwards to see properly when walking outdoors, particularly in windy/cold conditions (which we get a lot of here in the U.K.!)Ironically, in warm/hot weather things are better, and I value any day when there is no wind! I am not sure of my exact dosage, but I am told it is the highest that my doctor injects. Despite that, it has little effect. I have injections every 2 months, in six injection sites around each eye. I am interested to find out myself whether the cause is primary or secondary blepharospasm respectively, and I do feel that sometimes doctors are keen to go straight to a preimary BEB diagnosis without a full investigation of other possible causes which may suggest it could be secondary to something else. I am particularly interested to know if there is a separate underlying cause, as I am considering a myectomy, and feel that this may not be effective if the cause is something else. In the past I have had a car accident where my head was subject to severe back and forward movement, I also wore soft conact lenses for 30 years prior to the blepharospasm. I was subject to CS gas exposure (like tear gas) as part of my employment as a police officer, and also worked under dry and stressful conditions in a custody block, with very bright lights. I know it may sound as if I am stating the obvious, but I have found a peaked cap (you guys in the USA should have plenty of those with all your baseball!!) helps with the light, and avoiding restaurants, etc that have overhead lighting, helps. Perhaps your doctor could try different sites and see if that helps. I wish you well Carol, and hope that you find some relief. |
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